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Monthly Archives: December 2012

It just does not feel right around here. Something is off – it’s peaceful mind you, and very easy going, but there is an element of “offness” that just does not work. You see, Elliott is not here, and as much as we are all enjoying the mellowness of his absence (and we are), we have guilt about those feelings as well. We needed this break, we are appreciating this break, and yet, we miss the E man like crazy.

Elliott is at winter camp – and likely (almost positively) having an amazing experience. He’s been before – and we’ve gotten to know a number of the camp counselors and the leadership team at Friendship Ventures almost like extended family members. They are as amazing as people can get, and Elliott gets the opportunity to hang out with him, learn lots of cool life lessons, hang out with other kids, and most of all, have fun. It’s kind of awesome. And, frankly, we all needed this break.

We had plans to do lots of things these past two days – and have not accomplished any of them. Things like the tornado movie at the Science Museum, or breakfast at IHOP during a busy time (things that would be possible, yet likely challenging, for Elliott). Yet, when we dropped off the E man off, somehow we all just craved a little bit of quiet time, and after relishing the ease and peacefulness of just being quiet for a short time we’ve just felt a little off. Both Henry & Ada have been enjoying their time, and yet sharing with us how much they miss their brother. Ada has been asking all day when we get to pick E up, and both kids are making plans for our New Year’s Eve as we’re having cousins over and they wanted to make sure we had all of E’s favorite fondue ingredients on hand. In short, we’ve enjoyed our time, but miss the regular state of semi-chaos that is our home life.

While I expected to get so much organizing and paperwork done – truth is I’ve become obsessed with watching “Homeland” – having seen 7 episodes in two days. In this way, the E man and I can be very alike, getting really “stuck” on something in a hurry – and while our passions may differ – we can both get really intense about things in our own way. That said, I don’t have the luxury of watching 7 episodes of anything most of the time, and it has been quite decadent to be sure.
So, tonight, in the middle of watching “Homeland”, I was grateful to learn via Facebook that E was participating in the camp talent show and doing a dance with his cabin mates. I can see him now – kind of reluctant, but also kind of loving it. Dancing a bit awkwardly, but also relishing the moment. I’m smiling just thinking about him, missing him, but recognizing how these few days have been healthy for all of us.

Tomorrow, we reconnect with our boy and celebrate the eve of a new year. We have much to celebrate, much to hope for and much to continue working on – but together, we can accomplish great things, knowing that we will stumble a bit along the way.

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I’m tired, frustrated, overwhelmed, cranky, and decidedly not Christmassy. As an Autism Mom, I’ve been dealing with peaks and valleys for (gulp) over nine years. I keep believing that this ASD stuff will get easier, and while in many ways it has, sometimes the grief is every bit as raw – just in different ways. Right now, I’m in a funk, and I own that.

Frankly, the small folk in our house have been a bit “off” since Thanksgiving – each in their own way. Ada a.k.a. “Bob the Elf” blew us out of the water with amazingness when she did a rock star job as a Flower Girl at Ally & Andy’s wedding. She had an amazing role model in her cousin, Amelia, who is as girly as they come. But let’s face it, it took months and months of hard work for “Bob” to pull this off, and with the help of many, many people, she did! We’re talking flower petals down the aisle-hair done- poufy dress-dancing at the reception kind of awesome.

Somehow, it feels like a switch got flipped, and she’s been a ball of snarkiness, destructiveness (our poor Christmas tree), & over-the-top hyper-activity ever since. It is anything but relaxing spending time with “Bob” these days.

Henry had a terrific fall, and after a pretty miserable 3rd grade experience last year, came out of the gates strong this September as a 4th grader ready to rumble (and with an amazing teacher he also had in 2nd grade who really “gets” him).
Ok – had to break here for a moment to get my 3rd cup of coffee this morning (Jet Fuel for you Keurig fans out there – it’s the strongest I could find – it’s one of those days).

Right after Thanksgiving, I got a note from Henry’s rock star teacher saying that while he had been doing wonderfully, he had a really off day, and ever since I feel like it’s been pulling teeth to get him to complete homework, eat anything besides crescent dogs, and speak to us without snarling. So. Not. Fun.

Then, there’s the big guy. Where do I even begin . . . to say we’ve had a difficult autumn with E man would be an understatement. I’m not going into great detail here as there are about 20 red couch stories I could pen from this fall, but I haven’t as I have had no time to write and I’m just not ready to go there yet. Know that it’s ugly, that we’ve reached out for help (and received it) from a multitude of sources, and that our “village” is remarkable and we are grateful every day to have such amazingness in our corner.

Here’s the deal – autism can be really messy. Most days, when I try to describe to someone who does not “live” autism what it feels like to parent day to day, I share with them that it’s not the “big” stuff that gets to me – but the constancy of the little things, day in and day out. Hours and hours and hours of the same questions, repeated routines and rituals, the lack of leisure skills and the desire to just follow me all day long talking at me – not communicating with me. By 7 p.m. – my nerves are so fried and my patience so depleted, that I just throw myself on my red couch and have my own private mini-meltdown many evenings. I’m not proud of it – but it’s true.

But every once in a while, the big stuff gets really ugly, and overwhelms me. This has been one of those weeks. Several days ago, I started finding pieces of poop all over the house – yep, here’s the ugly stuff. Probably 2 or 3 times a year, we go through this lovely “phase”, and every time, I hope it’s the last. Ho, ho, ho – apparently it’s not.

Yes, Elliott is fully toilet trained, and has been since age 3. My sense (and Mother’s intuition) is that it is a control issue. Going to the bathroom is something he can control and when he feels powerless for whatever reason, this is one thing he can revert to. While I wish he were able to put this into words instead of small pieces of excrement all over the house, I don’t get to choose. It’s not huge – more like little tiny pebbles, but it makes me sad that I’m telling you about my 12-year-old. It gets worse.

Last night, he must have used the bathroom, and likely was not feeling so hot. The bathroom was a mess – poop everywhere. Most things got thrown away – even the garbage can – thankfully; I think the rugs can be salvaged. But, it was an ugly way to wake up, and I’m thinking it was probably not such a fun experience for my boy either. Welcome to autism – Kramer style.

All of this occurring after, Monday evening, when he for some reason tried to dump dirty cat litter down our basement drain pipe, poured water all over it, and was made to put on old clothes and help to clean it up. Yep, a crappy week, indeed.

He’s also been waking up exceptionally early (4:30ish) eating a bunch of sugar that we neglected to lock up, clapping, stomping, and knocking on every bedroom door. Sleep deprivation has been hard on our whole family, and frankly makes me want to throw my jingle bells out the window (and I’m medicated).

I wish I understood what was going on in that brain sometimes. I wish he were able to communicate more effectively with me. Sure, he can talk (& talk & talk & talk) and I’m so grateful because some kids with autism never do. But talking and communicating are very different things, and for as much time as I spend “talking” with Elliott, sometimes I feel so very lonely.

So, my Christmas spirit is depleted, “Bob” has broken a large share of the ornaments from our tree, the middle man will be angry if we have anything besides crescent dogs for dinner, and I should do a once over on the house to see if Elliott has left me any “gifts”.

And while our little corner of the world hasn’t been so “merry”, I get that all I have to do is turn on “CNN” to realize true grief & hardship.

Some years are just more “Christmassy” than others. And despite the “crappy” stuff that has been happening around here of late, I am determined to spread some good will in our own way. Heck, even the Grinch’s heart grew 3 sizes – right? We’re taking on the challenge of 26 random acts of kindness, and while the children will likely (almost positively) complain about what we have in store, complain away! Heck, might as well put “Bob” to work spreading some good will before he needs to head back to the North Pole, don’t you think?